The mental load of a carer

There’s a hidden mental load of a carer of a child with a disability. From extra physical care, to the administrative load of therapy, to the financial and emotional toll of caring.

In a 2015 study in Japan, they found that close to half of parent/caregivers of children with disabilities had psychological distress. Further, almost one in ten parent carers had a serious mental illness. This is much higher than general population averages of around one in 25 people with serious mental illness. Of these mental illnesses, depression in particular was found to be more prevalent in parents of children with a disability, according to a 2020 report from Canada.

Why do carers have poorer mental health?

A carer may have reduced income and lower employment, as a result of having to care for a child with a disability. Low income is associated with poor mental health in several studies, such as Marquis et al.

There can also be social isolation, due to stigma associated with the disability or the severity of the disability, which leads to less support and social connection.

In addition, parents of children with disabilities are likely to have more stress and anxiety. This could be worrying about their child. Also, the extra time demands of therapy and intensive supports reduce the amount of time for leisure, leading to more stress.

There are increased physical burdens too – there are supervision and care activities required for a dependent child. This decreases time for the carer, as well as placing physical strain.

There may be significant financial demands on a family, as some care or therapy for the disabled child may need to be funded privately.

Also, there are large administrative burdens associated with sourcing, accessing and implementing therapies. This includes finding providers, completing surveys of information, booking appointments, and organising funding to pay for therapies. In addition, there is administration around communicating with school teachers around incidents at school.

All of these things add up and mean that the mental health of carers is a fragile thing.

Unpacking the mental load of a carer

Raising a child with a disability is not like parenting a neurotypically developing child. Here’s a morning just to give an idea of some of the possible mental and physical load of a carer.

The morning mental load

Your autistic child, B, doesn’t sleep well, so they’ve been up since 5am. This makes you as a carer feel tired before your even begin the day.

Of course, B wants to regale you in a monologue about their interests as soon as they awake. So it’s constant noise in your ear before you even get caffeine in your system.

B is a fussy eater, so what they had for breakfast yesterday is not what they want today. It takes 20 minutes of complaining about not liking cereal, toast or margarine to finally have them agree to eat some dry pretzels for breakfast instead. But they need to be in be in the special red bowl at the couch or there’s no eating this morning.

B starts repeating “I’m bored” repetitively, so you put the TV on for visual simulation while eating breakfast.

Getting ready for school

Self-care is challenging and takes spoons of energy away. Plus, now you’ve put the TV on B is staring at the screen and not listening to your requests to get dressed. So as the carer, you need to select the clothes, dress B and put on B’s shoes for them as well as carry their school bag to the door.

Meanwhile, B is getting anxious because they’ve realised that today is a PE day at school and they don’t like this subject. So they start saying they don’t want to go to school, saying they have a stomachache and getting heightened by throwing couch cushions around the room.

Finally, after much work and effort, you get in the car to drive to school. You’ve spent all morning actively and physically getting your child ready. You’ve had constant noise. Plus you have to deal with the mental worry of B’s anxious state and what might happen at school.

After school

Don’t forget the mental load of booking appointments, driving kids around, paying bills. Also, remembering what you need to talk to therapists about. There’s the constant communication with school, responding to teacher emails. Add the worry that everyday something might go wrong at school. Today you got an email saying your child spent the day hiding under their desk and refused to move. So after school you need to talk kids through how to deal with bullying. Plus provide co-regulation during stressful homework time, stepping in to provide Social Thinking when they fight. Doing extra washing because they still have toilet accidents. Hand washing them in the bath because they don’t like showers raining water on their face and eyes. Or sitting with them for 40 minutes each night to help them settle and go to sleep.

It’s a long day of physical care, with lots of mental worry. And you get to do it all again tomorrow!

Mental Load of a Carer

It’s no wonder that carers have poorer mental health. While the physical demands are difficult to reduce, apart from accessing respite care, the mental load can be supported with a good planner. A planner that supports reducing life admin, and supports proactive preventative mental health strategies.

References

Fortin-Bédard N, Ladry NJ, Routhier F, Lettre J, Bouchard D, Ouellet B, Grandisson M, Best KL, Bussières ÈL, Baron M, LeBlanc A, Lamontagne ME. Being a Parent of Children with Disabilities during the COVID-19 Pandemic: Multi-Method Study of Health, Social Life, and Occupational Situation. Int J Environ Res Public Health. 2023 Feb 10;20(4):3110. doi: 10.3390/ijerph20043110. PMID: 36833804; PMCID: PMC9961490.

Marquis SM, McGrail K, Hayes M. Mental health of parents of children with a developmental disability in British Columbia, Canada. J Epidemiol Community Health 2020;74:173-178. DOI:10.1136/jech-2018-211698

Yamaoka Y, Tamiya N, Moriyama Y, Sandoval Garrido FA, Sumazaki R, Noguchi H. Mental Health of Parents as Caregivers of Children with Disabilities: Based on Japanese Nationwide Survey. PLoS One. 2015 Dec 21;10(12):e0145200. doi: 10.1371/journal.pone.0145200. PMID: 26692344; PMCID: PMC4686893.

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